Getting accountability or justice for Connor’s death in Slade House assessment and treatment unit was to be a gargantuan task as Southern Health NHS foundation trust continued the fight to protect its reputation. Nearly four months after Connor (nicknamed Laughing Boy), 18, had been found unconscious in the bath at the unit after he’d had a seizure and drowned on 4 July 2013, the trust commissioned an independent investigation into what happened. Our concerns before its publication were stacking up, partly through the careful scrutiny of documentation from trust meetings and commentary from a growing number of people on social media. This group, which became known as “Team LB”, included George Julian, a freelance knowledge transfer consultant, members of Oxfordshire self-advocacy group My Life My Choice, and professor Chris Hatton who published a bespoke blog, Data for LB.

Many more people offered support through my blog and via Facebook, and some time in February 2014 these streams coalesced into a #JusticeforLB campaign with a blog, hashtag and Twitter feed. It was followed by social workers, students, academics from a range of disciplines, self-advocacy and advocacy groups, journalists, documentary film-makers, charities, health professionals, parents and carers, and data protection and human rights specialists. This diversity was to be a great strength.

The trust’s independent investigation was published just after 6pm on 24 February 2014. Before the advent of social media, people would have pretty much gone home by then, but Twitter doesn’t close. Outrage was generated by the incontrovertible evidence that a young man had been failed by an NHS trust, despite initial claims that he had died of natural causes. The report, together with the failings identified by the Care Quality Commission inspection, painted a picture of an NHS unit bereft of leadership, the most basic of healthcare provision and an almost wanton carelessness around the lives, and deaths, of patients.

Connor hadn’t had a chance. The level of care was negligible. The report authors defined Connor’s death as preventable because the unit staff had both knowledge (that Connor was diagnosed with epilepsy) and opportunity (Connor’s previous seizure on 19 May) “to take steps to stop the incident from happening and did not do so”.

As I read the report in familiar tears, one extract from the minutes of a meeting on 3 June 2013 made me pause. It described a discussion about Connor saying he’d “remembered” biting his tongue. By this stage the documentation, records, email exchanges and minutes replayed across my eyelids like a remorseless and relentless ticker tape when I tried and failed to sleep.

Experience gained through pretty much 18 years of negotiating, and trying to keep on top of, various appointments, reports, blows and pronouncements relating to Connor had seamlessly shifted to a post-death mastery of the micro-detail of records, documentation and other minutiae that related to his time in the unit and earlier. I knew I had not read anything about Connor remembering that he bit his tongue in anger.

It turned out that, instead of full sets of minutes for some of the weekly team meetings, we had been sent “notes”. These did not include reference to the tongue biting. So we had no idea that Connor’s seizure activity was dismissed in a meeting four weeks before he died. We had no idea that Dr Valerie Murphy [the lead clinician responsible for Connor’s care], agreed to reduce his observations to hourly given there was “no evidence” of any seizure activity. I can barely type these words as I feel such incredulity, rage and deep sadness at the grotesque absurdity of these actions.

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